As soon as I started this blog I immediately wanted to write a post about our NICU story. Having a baby (or in our case babies) in the NICU is a terrifying, stressful situation. It was by far the hardest thing I’ve ever had to go through and definitely worth sharing. Everyone’s NICU story is different but, I know for me it was nice just to know people had gone through what we were going through and to not feel alone in this. So here’s how it went for us.
When we found out I was pregnant for a third time we weren’t worried about much. We had 2 healthy children that resulted from 2 wonderful pregnancies. I still had plenty of prenatal vitamins and it hadn’t even been 2 years since I was last pregnant. I kinda felt like a pro. Needless to say, I was definitely feeling a little too cocky.
Give that cocky one twins! Is what I imagine the Universe thought…
The possibility of twins never, ever crossed my mind! Once we found out, we were thrilled! Sure, there may have been some profanities yelled (loudly) from that ultrasound room, but it was all out of love, and shock…a lot of shock.
A twin pregnancy was different from my first 2 singleton ones, but still, it was going pretty well until…
Routine Ultrasound, turned not so routine
I was not quite 35 weeks yet when our Dr saw something he didn’t like during a routine ultrasound. I couldn’t believe it. Just a few days before this ultrasound I had a non-stress test where the nurse said “Well, they seem pretty happy in there!” I remember thinking, without a doubt, that I could keep them in for a few more weeks.
But here we were, over 5 weeks early and our Dr was telling us this had to happen in the next 24 hours…by the next day our twins would be born. I tried not to be scared but I wasn’t ready…they weren’t ready…none of us were ready. We did have time to go home and get things situated, which was helpful. We had to make arrangements for our other 2 children who were 3 and 2 at the time. Thankfully our family was there and ready to help.
Bye, Bye birthplan…
With our boys were coming this early it meant we would have to deliver at a different hospital and with a different Dr. This was a really big deal for me. Instead of being at the same hospital we had already used twice and having my Dr, who I love and trust…we would now be in an unfamiliar hospital 45 minutes from home and with a different Dr. Any plans I may of had went right out the window. But none of that mattered now. If this was the hospital that was best equipped for whatever our boys may need, so be it.
My C-section went well
The hospital staff was amazing. Of course we were nervous, but we were in the best place we could be. My C-section went well and both boys came out screaming! I wish I could explain how beautiful that was to hear but there really are no words. I had about 2 seconds with each of them before they were rushed off to the NICU, my husband following close behind. I was hoping I would be joining them soon. But I had to recover from the c-section. For 2 hours I laid in a bed somewhere in the hospital. It felt like forever. With no update on my boys, it was a rough couple of hours…and I knew that was just the first of many to come.
When I was finally taken to my room in the Maternity Ward I was greeted by a bunch of family, my 2 bigger kids (who weren’t really that big) and my husband. But not our newborn twins. They were in the NICU, in incubators, with feeding tubes and CPAP machines. My husband had been with our boys and he assured me they were doing ok. (Ah, sigh of relief.) But, for a reason I can’t remember anymore, I couldn’t go see them until a certain time, which was 3 am.
I honestly can’t remember the why, but I cleary remember what time I could go see them. I remember because the nurse told me to get some rest for now, and I thought “are you fucking crazy! Rest! No fucking way! I’m going to stare at this clock and when that hand strikes 3 am I’m out!” I couldn’t sleep. The need to see my babies was all consuming. I wanted to do what I did with our first 2 babies. I wanted them in my room! I wanted to hold them, sing to them, comfort them, nurse them and give them my strength. They needed me! They weren’t ready to be outside of my body and I was definitely not ready for them to be outside of my body.
So for now, I watched the clock. The time finally passed. And I was able to go to the NICU and see our boys. That first time seeing them I had so many emotions bubbling over inside of me I really don’t know what I was feeling. This was so different than our first 2 kids. My 2 newborn babies were in incubators and so teeny tiny! I couldn’t hold them or nurse them that night. I couldn’t even touch them. It was so hard, but, they were doing ok.
Letting go of my expectations, the beginning of my NICU journey
They were breathing on their own, although they needed a CPAP machine. They couldn’t nurse yet so they had feeding tubes. Sure, they were doing ok but this was not what I had hoped for them. I had such high hopes of keeping them safe inside my belly until they were ready. But I quickly let go of all my expectations. Instead, I focused on what our preemie twins needed to get through this!
The next day we started breastfeeding. It’s always a bit of a struggle at first but I knew I just had to keep trying. Plus any skin to skin contact does amazing things for infants and moms too! All the feelings of guilt, fear, anxiety, all of that seemed to slip away when I felt my infants in my arms.
Still, it was HARD to stay patient during this time. While I was still in the hospital I spent as much time with them as I could. The nurses were happy to let me do diaper changes, and swaddling, even bathing. At first, I was unsure about what to do and not to do in the NICU. But the nurses quickly made it clear that we could be as involved as we wanted. But my stay at the hospital only lasted 3 nights.
Leaving the hospital without our twins…
NICU nurses are among the most welcoming, non-judgemental, amazing people you will ever meet. The staff at our hospital was absolutely wonderful, extremely competent, as well as compassionate. But even knowing all of that, leaving our boys in the NICU after I was discharged was the hardest thing I’ve ever had to do. A mother leaving the hospital without her baby just isn’t right. I wanted to beg the hospital to let me stay. Everything in me was telling me I could not leave them! But I also had 2 little children at home who really missed their mommy. And I knew they needed me too.
So I did what us Moms do, put on that brave face and do the hard things. I walked out of the hospital, sick to my stomach, fighting back tears…leaving my newborns behind. I tried not to look at the empty carseats in the back. I tried not to think about how hard the coming weeks were going to be. I just kept reminding myself, our boys are ok, they are alive and getting stronger by the day, this could definitely be worse. It also helped to focus on how happy everyone would be to have me home. Our other 2 kids were definitely missing me bad by this point.
Of course, I called the NICU within hours of being home. They gave me an entire update and asked if I’d like a call back when the nurses switched. This helped. Nothing makes this situation any easier, but this definitely helped.
Now we were home and our boys were 45 minutes away in the NICU
Now that we were home we were 45 minutes away from the hospital and our newborn twins. I hated it! I couldn’t drive myself up there because of the c-section. Plus, we had a 3 year old and 2 year old who needed to be babysat every time my husband and I wanted to go. Sometimes we would just bring them. Then we would just take turns going in the NICU while the other stayed in the waiting area with the other 2. Nothing about this was easy. Ever have a 3 year old and a 2 year old in a waiting room area? I don’t recommend it. It wasn’t easy for them either. But we managed. We made it there every day and I always tried to plan it around feeding time.
I wanted to make the most of my time there so feeding times seemed like the best idea. We continued to build our bond with our twins despite the distance. But something I hadn’t thought about was the fact that Calli and Nolan had not been able to see their brothers yet. How bazaar, right? They were hearing about their twin brothers, they were going along for some of the visits, they could see pictures…but they hadn’t been able to see or touch them yet. When our twins were moved to the second NICU area they could look through a window at them. I mean, I guess that was something but still not the same as meeting and holding your new baby siblings. Just another thing that we had to navigate through atthis difficult time.
Finally, our twins were released from the hospital!
After 9 full days in the NICU our twins were released. They had met each milestone and goal set for them. Our strong boys were coming home! There really wasn’t much warning, I’m sure the hospital staff probably wants avoid getting anyone’s hopes up. So when they called, we were completely caught off guard and were just so excited that we ran out the door! We left our diaper bag, going home outfits, everything, at home! Panicking on the way to the hospital, I made my husband stop at a Walmart for a diaper bag, diapers, wipes, etc. As if we even needed anything. We had so much stuff at the hospital already, clothes, hats, blankets. Plus, the hospital staff stocked us with diapers and anything else they could fit in our bags…we didn’t need anything! Just our boys.
Their first night home I just wanted to stare at them, I actually did most of the night. They were perfect, slept well and ate well. Calli and Nolan got some quality time in. Calli even helped with feeding times. It was just about perfect. After their second night home though, I noticed a change in Lennon. It was subtle but I noticed a difference in how he was feeding, breast or bottle. He’d stop and start with a whole lot of fussing. I immediately went on alert. When I got up for his 3am feeding his face didn’t look right to me. My husband couldn’t see but I knew something wasn’t right. By 7am I knew for sure something was wrong and called our pediatrician. He met me at his office on Easter Sunday.
By this point, the lower right side of his face was swelling up. Our pediatrician was baffled. He immediately got on the phone with our neo-natal doctor who told us to rush him back to the NICU.
Our NICU story was not quite over
If our pediatrician was not so involved with our situation and not so caring he could have easily just sent us to the hospital where we would have had to go through the ER. That definitely would have taken longer and he probably would have ended up on the pediatric floor instead of the NICU.
But because he knew our neo-natal doctor and decided to call him we were able to walk right back in there. And there is no doubt in my mind that that saved Lennon’s life. We went directly to the NICU and as soon as they got him in there the first thing they did was put in a breathing tube. He had swelled up so much they were afraid his breathing was going to get cut off.
We are lucky we got him back to the NICU when we did
All I kept hearing from the nurses was “Thank God you got him here when you did” I felt like I heard it a million times. It was all I could hear. And all I could think was “What if I didn’t? My son would be dead.” I completely broke down, hysterical crying. All that strength I had been able to hold up through all of this, from that last ultrasound all the way to this point, just completely crumbled.
I will never forget those nurses who held me up, who kept telling me that I did good, that I followed my instincts, that I knew something was wrong and I got him the care he needed. They kept saying “Mom, you did good.” They said it until I believed it and finally calmed down. The next thing they wanted to do was a spinal tap, to make sure this hadn’t traveled through his little body. I walked to the waiting room to meet my husband and Lennon’s twin brother and let the doctors do their work.
They determined pretty quickly it was a massive infection in a cyst called a brachial cleft cyst. The spinal tap came back ok, which was a huge relief. They started the antibiotics.
And then I had to leave him again.
I had never been so scared in my life. Even with everything we had just been through, I didn’t feel fear like I did now. Fear for what was going to happen to our newborn. How could his underdeveloped immune system fight such a bad infection? Fear that his twin brother was going to get this infection too? Fear that this was all somehow my fault. And fear about surviving being a NICU mom again??? I thought we were done with this, I thought all these long days of traveling back and forth to the hospital were behind us!
Sadly, they were not. But this time only 1 twin was in the NICU. Which meant twin brother Logan would be going along for all the visits. When we did have someone to watch our kids, they took the 2 older ones. It was too difficult to leave all 3 kids including a newborn. So, our hospital visits now were my husband and I taking turns going in the NICU to be with Lennon and staying with Logan in the waiting room.
During Lennon’s stay he acquired the nickname The Bear from the NICU nurses. Despite how sick he was, they said he was like trying to hold down a bear whenever they needed to do anything to him (bloodwork, IVs, etc). This strength and fight that he had filled me with pride and hope. I had no doubt he had all the strength he needed to get through this! And the name stuck and now he is “My Lennon Bear”
Everytime I entered the NICU I could hear him yelling and crying from the hall but as soon as I entered the room he would quiet down. Even before he would see me, it was like he sensed Mom was there. I hated to hear him crying but I loved how he was soothed just by my presence. We were bonded, he knew me and I felt an enormous amount of love between the two of us.
More tough decisions.
But after a few days of him be back at the hospital I decided to stop breastfeeding. It was not an easy decision by any means. I was making plenty of milk. But breastfeeding is an enormous task. Breastfeeding for twins is a double enormous task. Add in the NICU stays, all the pumping to make sure I had enough to bring to the hospital, the sleepless nights nursing an infant just to wake up and travel back and forth to the hospital to nurse and care for another infant, plus taking care of a 3 year old and 2 year old…all while still healing from a c-section! I reached my limit of what I was capable of.
I’m proud that I was smart enough to make the tough decision to stop breastfeeding. I did it as long as I could and I was ok with that. Even after a nurse responded with “you’re giving up?!” when I told her that was the last of the breast milk I’d be bringing to Lennon. The only NICU nurse with zero compassion. Luckily, I only came across that nurse twice. Also lucky for me, her words meant nothing and rolled right off me. I knew I made the right decision for my family. I couldn’t be my best if I was completely drained and exhausted. Trying to do “everything” wasn’t going to help anyone if I wasn’t 100%. My family needed me to be 100% and if switching to formula was going to help me do that, so be it.
After 7 days, antibiotics were not enough.
After about a week of antibiotics the doctors decided Lennon would need surgery. The swelling was not going down the way they thought it should be so they needed to clean it all out surgically. I can’t tell you how much I wished it would not come to this but at this point I just wanted him to get better. I was in constant communication with his doctors. They would call me or come by while they knew I was there. He had a neonatal dr., an ENT dr. and an infectious disease dr. And each of them spoke to me every single day. They made me feel as comfortable and confident in his care as they possibly could.
His surgery was successfully completed. And that little dude handled it like a champ! After 10 more days in the hospital to recover, he was finally released. I was filled with so much joy and anticipation leaving the hospital that day with all four of our babies. I wasn’t even thinking about the actual madness that would come with having 4 children under 4 years old under 1 roof. In that moment my happiness over shadowed any worries or fears I had about the future. We were a family again, complete, with all six of us!
To read more about life once everyone was out of the NICU check out my post My reality with 4 kids under 4!
Share some of your NICU experiences in the comments below!
